Hello Nicole – March 2001

Dear Nicole, I have always been a high functioning woman with muscular dystrophy but the years of activity and pushing […]

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Dear Nicole,

I have always been a high functioning woman with muscular dystrophy but the years of activity and pushing myself are catching up with me. I have a weak neck for the first time EVER. My right arm and hand are considerably weaker. (I am right handed and this is really a problem.) For the first time in my life, I am scared.  I hate going through this hideous “phase” of my disability but I have to learn how to handle it and get through it. I know there are others who have this disease and are worse off than I am. I just don’t know how to accept any more loss of strength and functioning. I don’t think I have it in me to be honest with you. I appreciate your sharing your experiences and advice.


Dear Weakling,

When it comes to issues like this there are never any easy answers or simple responses. I also have muscular dystrophy and I know how hard it is to lose strength and functioning. As with any progressive disability it becomes a matter of living day to day and adjusting when our physical ability changes.

Loss of physical strength is devastating. All of us, even the most able-bodied person, will one day have to face the breakdown of our bodies. Of course, we fear this day. I believe our fear of physical decline is so overwhelming that it causes disabled and elderly persons to be shunned by our society. It is very sad when our fear causes us to shut down our hearts to the people experiencing this most difficult time. Many of us don’t even know how to be compassionate in the face of elderly or disabled people, instead we feel uncomfortable and we long to escape to our television ideals of fashion models and perfect health.

The problem is, if we have spent our lives escaping the reality of physical decline, we will be completely unprepared when our time comes. Somehow we have thought that it wouldn’t happen to us. Or that if we didn’t think about it too much it wouldn’t happen to us — at least not for a long time. We keep busy as a further assurance than it “cannot” happen — “not now.” We are so afraid of losing physical ability and health that we want somehow to be able to get a handle on it, to gain some sense of control.

Unfortunately, we can’t control our physical decline — even if we eat healthy, slow down, and try to be happy –eventually life catches up to us. Most of us feel we can’t handle it or don’t have the ability to cope with such loss. Yet, since we have no choice we find ways to cope. Intellectually, humans are very inventive and good at adjusting to change.

Our emotions are another story.

Every time I experience a loss of physical functioning I go through the same routine of emotions. First I panic and try to get away. I may try to hide, ignore or deny that this is really happening. I might even push myself further in an attempt to defy this loss of ability. I do anything I possibly can to get away from the fact of my physical decline. When I can no longer deny it, I get angry. I think this is not fair because I already had so many problems even without this new added problem! Somehow it seems like because it is unfair it should not or could not really be happening. I may find ways to blame myself, others, or God. I might think that if I promise not to do such-and-such again I will get better. In
time, these volatile emotions quiet down and are replaced by an overwhelming feeling of despair, hopelessness, or grief. Once there is no getting around the reality of my loss, there is no other more natural emotion than this type of depression. It is a time of sad hibernation, much-deserved self-pity, and introspection. Finally, this sobering up often opens the way to finding out how I can get along now that this has happened to me. I start life again from my new perspective.

I have found that there is not only no way to get around our bodily decline, but there is also no way to get around our emotional reaction to it. We need to allow ourselves to go through this hard time and not add stress and judgement on ourselves by telling ourselves that we should be handling it better. We all handle it the best we can. It is not easy. No amount of positive thinking can lessen our pain (although it might mask it temporarily). There is no reason why we need to appear as martyrs when we are going through one of the hardest times of life. I think it is more helpful if we just try to be human

To allow ourselves to go through all the feelings without judging ourselves.

To admit we feel like we can’t get through this and that we hate it.

 I think you would be inhuman if you felt any other way at this time.

While I certainly feel overwhelmed by the reality of my progressive loss of physical ability, I also know that even though I feel I can’t get through this, somehow eventually I will find a way. I hope this helps.

— nicole

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